My Story: EDS and fibromyalgia
I'm a caregiver to my 20 year old daughter who has Elher-Danos and undiagnosed fibromyalgia (soon to see a rheumatologist). She lives at a 7-9 out of 10 on the pain scale.
Her pain really ramped up late last year. Right now she's on her SEVENTH pain med. We finally saw pain management, and one of the things her Dr went on and on about was the problem with opioids being dependence.....NONE of the pain meds she's tried previously touched her pain, and he prescribed Lyrica, which she DIDN'T want to be on because of the side effects. Surprise, surprise, it DIDN'T work.....
She can't work, she can't even do light household chores. Everything is on me. I have to work 2 jobs....
She has a lot of migraines, and we rarely get to go out for anything besides Drs appointments and physical therapy....and both of them wipe her out for the rest of the day, sometimes days, especially PT.
With her pain and migraines, she feels most comfortable (if you can call it that) in her bed. We don't even get to watch tv together.
I cry for the times we miss. The things we used to be able to do. Going to the mall, dollar tree, even Walmart. We very rarely get to go out for anything not healthy related.
I feel like I'm losing my baby girl to the pain, and Drs would rather leave her pain than prescribe something she might get dependent on.
People get dependent on insulin and other meds, but don't you dare get dependent on opiods!!
Since when is being dependent (and less pain) a bad thing???
I just want my baby girl back, I want her to have a good quality of life, and because of the pain, and no appropriate pain relief, she doesn't.
People hv commuted suicide because their pain isn't treated.
OAIN MANAGEMENT IS SUICIDE PREVENTION!!!!
This story is shared with the patient's consent
If you or someone you know is struggling with chronic pain management, please reach out to healthcare providers and advocacy organizations for support.
Share Your Story
Your experience matters. Help raise awareness about the impact of opiate over-regulation on chronic pain patients.
Contact Us